(Closed) Interstitial Cystitis help!

I have had issues with, what I thought was, chronic UTI’s since I was in the eigth grade. Having at least 7 a year. Strangely enough the pain was not going away with medicine. I have been going to a Urologist for a year now and today he came up with the diagnosis of Interstitial Cystitits. I was hoping this would not be the diagnosis as there is no cure. It hinders everything I do, I am constantly in pain, do not have sex for fear of the pain, and even miss school or work because of the pain! Is there any other ladies that suffer from this awful illness? What have you done to eleveate this pain? Please help! I can’t take it any longer!

I posted this in the beehive also then realized it wasn’t the right place to post it. Thank you ladies.

All I can offer is prayers. I have a friend with the same condition who is currently in the hospital having her urinary bladder “flushed” to see if that will help. Our naturopath does recommend taking probiotics.

@lhelm93: Hi, I don’t know how much I can help because I have the same problem and am not totally better despite trying lots of things. You are not alone though!! !

The main thing that has helped me is physical therapy. I didn’t believe my urologist when he said that this might work..but it really helped! I would keep going forever if my insurance would continue to cover my sessions. My physical therapist also tuaght me some relaxation and deep breathing excersies. I thought this was silly at first, but it helps! It turns out I was making my physical symptoms worse by panicking that they would never get better. I can cope with pain better now.

Benedryl also helps me when I am really in pain. A lot of the pain from IC is related to inflamation and histamines. I find that it is worth me sleepwalking through work/school if the alternative is not being able to go.

Diet made a difference for me. I do not drink coffee or soda anymore and try to limit other acidic foods. The coffee was a big change. I also stopped taking birth control pills and while I don’t know of any scientific connection, I feel my pain levels are lower. My doctor has no idea why this would be, but I’ll take it!

Let me know if you have any questions. I feel for you and just wanted to send some support out there 🙂 Things will get better. This is not the end of your life. I promise.

@rachel-michelle: Ugh, I have the same problem too, except I haven’t actually been diagnosed with anything yet because of delays in the health care system. But it is pretty horrible. I haven’t recovered from a horrible bladder infection I had 10 months ago (the first and only one I’ve ever had in my 28 years), and it’s completely messed up my sex life, my ability to sit for long periods of time, to wear tight pants and to dance. I already had a crapload of health problems to begin with, so this is not exactly something I need to add to my file.

However, I have heard that massage and relaxation can help. In my case, I actually need to be diagnosed before I can start doing anything about it, but it’s definitely not the end of your life! Even with the pain, I am still living pretty much the way I did before. I just carry around ice packs with me for when it burns really badly, and Tylenol takes the edge off it. I still managed a major promotion at work, and only had to call in sick when I had the initial infection. My boyfriend has been amazing and understanding, and I love him so much more because of it. He has taken me to emerg so many times and sat with me and held my hand while they poked and prodded me with all kinds of needles and IV’s.

So it’s definitely not the end of your life!! I have days where I am so bad, and yet I think about all the good things I have in my life, and it takes my mind off the pain. I heard things like fibromyalgia are much worse.

I have this and have restricted my tea to one cup a day (sob, sob, sob) and have also eliminated citrus fruits and tomatoes. Doing this has helped, as acidic foods are known to be triggers. I also take a product called pre-relief, which is brilliant if you are eating something with trigger foods (trigger foods are in a *lot* of meals!). I even find it helps me if a meal is safe. Plus, sometimes I take it when I am in pain. It does contain calcium however, so it is important not to take tons of the stuff and to separate it from thyroid meds if you are on those.

Other people have recommended a product called Cystoprotek, but I have no experience of that. People rave about it though….

There are also certain medications that your doctor can prescribe for you.

I’d highly recommend reading the IC-network site. There is a lot of info there and a very active forum.